Monday, January 26, 2009
Here it is...our new Team Chunky Monkey button!!! The best part is that I did it all by myself (not that you can't tell by the amateur graphics). I could have tried to figure out a really cute graphic and spent hours trying to make it fancy...but, the truth is I love this ultrasound picture of Bennett. I was 24 weeks pregnant and he is sucking his thumb...he really worked hard on sucking in the NICU when he didn't have a vent tube down his throat! Anyway, I am trying to figure out how to attach the html code, so all of our friends can add our button to your blogs in an effort to help us raise money for our March for Babies Team. We can't thank you enough for your support!!! Only 89 days to go!
Sunday, January 25, 2009
Oh, what a weekend it has been! Baths, meds, humidifiers, nightgowns, naps, more baths, breakfast in bed and a very fancy “Last Supper” (you’ll understand more in a minute).
Saturday morning started with a wonderful breakfast in bed treat from Daddy. Yummy, cheesy scrambled eggs with sausage and buttered toast served with OJ. Daddy woke his favorite ladies up with their favorites ~ what a way to start a day! It was a lazy day…the kind that you don’t get out of your pj’s for. We were in our bathroom a lot so Ellie could be exposed to as much steam from the shower as possible. We did finally talk to the pedi and he said her lungs were clear ~ PRAISE GOD!!! The rest of the weekend we knew would be spent making sure we didn’t miss a dose of Tylenol or Triaminic in order to get the full effect of the Rocephin shot they gave her. Ellie napped with me and we woke up to a pizza, dinner and a movie.
Sunday started just as wonderful as Saturday with breakfast in bed from Chef B…yes, we are spoiled girls! B likes to get up really early and Ellie and I like to sleep in together. This gives B a lot of time to do important things like make breakfast for us, prepare for our gourmet dinner, do a few loads of laundry and play a little Madden ’09. How spectacular is that!!!
Ellie is sounding better, but is still very congested so we continue to give her the Triaminic. I am pretty sure our water bill will be about ten times as high as it should be because of the 27 baths and showers that have been taken or used for their steam this weekend. We are just so thankful that our regimen seems to be working. On the other hand, my chest has started to become very congested and I am coughing up some junky stuff pretty regularly. I am sure that taking care of a baby with a double ear infection and bronchitis isn’t the best thing for my CF, but that’s life. I will probably head to the doctor (that didn’t know anything about CF) and get an antibiotic…or I could just take the rest of the “yummy pink bubblegum stuff.”
This evening Chef B served the most wonderful “Last Supper.” You see, we are going back on our Weight Watchers Diet starting tomorrow. I have about 10 pounds that I need to have gone before: 1. we do IVF again 2. We go on our cruise 3. We visit Disneyworld. It shouldn’t be hard…it just takes a little dedication. I lost 45 pounds and over the last few months I have put on about 10, so off they go! For our last FAT supper Chef B served marinated, pepper crusted steaks, twice baked potatoes, and cheese bread…WOW! Holy wow…it was the best meal I have ever had from my Chef! He is known as a wonderful pastry chef, but he has proven himself worthy to cook savory meals as well. I told him I would give him total control of the kitchen every Sunday for a “Sunday Splurge” meal created by him. What a great guy he is! I didn’t even have to clean up after him…AMAZING!!! If any of you do the WW program and have any wonderful recipes to share I would love to see them!
So, 91 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 will take you directly to my page which is: http://marchforbabies.org/littleengine
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) that come out to support us on April 26 at Robertson Stadium at 9am. We have 91 days left to raise about 2500. That comes to about $27.47/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!
I’ll sign off with this little side note tonight. In 2006 right before Brandon and I went through IVF we ordered Chinese food for dinner. We opened our fortune cookies and mine said in big bold letters: CHILDREN. On Friday night we ordered Chinese again and Brandon’s fortune read: A big fortune will descend upon you this year. After the last couple of crazy weeks we have had…that made us laugh…a lot and out loud!
Have a blessed week!
Friday, January 23, 2009
The Price of...
2 doctor visits in two days: $50 (w/o the radiology bill)
1 unused oral antibiotic and 1 IM antibiotic shot: $300-600 (depending on amount covered by insurance)
2 sleepless nights: exhaustion
Watching Ellie dance in her white keds with nothing but panties and a t-shirt on tonight...PRICELESS!
Just my luck...the doctors office never called us this afternoon with her results. I guess they just want me to call them in the morning and remind them that she was a PREEMIE and that she is at increased risk for RSV. (Yes, they are open once a month on Saturday and tomorrow is that day.) If I got paid for all of the medical consulting I have to do for our family I would be set by now! Actually, I love our pedi and I am sure the reason he didn't call is because he isn't worried. Then again Dr. Mangal knew on November 7th that I was diagnosed with CF, but he didn't call to tell me until January 6th...I think I'll still call them tomorrow. :)
So, Ellie napped while I rocked her from 5 until about 7:30. She ate a little bit of dinner, played in the tub with lots of steam in the bathroom (thanks friend for the advice)and then got a chocolate covered pretzel as a treat. Now she is watching Sprout TV, I am on the laptop and Brandon is snoring next to me...he OBVIOUSLY had a long two days as well...sure! I will update tomorrow with any new info.
Please keep Ellie in your prayers. She always seems to get a little worse when she is sleeping which makes it impossible for me to sleep. However, I am so proud of how well she has done with this whole illness thing (if you take out the whole refusing the medicine issue). I gave birth to two of the most amazing and strong willed little miracles...what a blessing!
After the horse shot in her leg they made us wait to make sure there was no allergic reaction and then we headed home. We are still waiting on the results from radiology, so I will post an update this evening.
Please keep our precious little trooper in your prayers!!!
Thursday, January 22, 2009
What is going on these days? I am pretty sure I am in a funk and to be honest I am not sure how much more of this I can take. Let me recap the last few weeks:
Jan 5th: Outpatient “minor” surgery
Jan 6th: Call my doctor to be told that I have CF…no further info given
Jan 6th-Jan 12th: Research 24 hours a day about CF
Jan 12th: nightmare doctor visit to get info about CF and leave with NOTHING!
Jan 15th: It was the 19th Bennett Day…that means that my little boy has been gone for over a year and a half…truly unbelievable.
Jan 17th: Slam my car door on my leg ~ gouging a chunk of skin off of my shin…PAINFUL! Host a girl’s night at my house.
Jan 18th: Lay on the couch for most of the day b/c I am pretty sure I am getting sick
Today: Take Ellie to the doctor for a fever and runny nose to be told that she has a DOUBLE EAR INFECTION!!!!!! (This is the first time she has EVER been sick and on antibiotic)
I am strong…I know that about myself. So, when I start to feel really stressed like I do right now ~ it’s really bad. My biggest fear, from the minute I left Bennett’s tiny body in the hospital the day he died, has been something happening to Ellie. I stay at home with her because Brandon and I never wanted to leave her with anyone else out of fear that something could happen to her. I have kept her out of organized child settings because she has always been at higher risk for getting sick and not having the immunity to fight it off. I breastfed her for 2 years (gasp…it was totally NOT my original plan) because my pedi told me that her good health was probably attributed to the antibodies she was getting from the breast milk. So then, you can understand the pure fear that resonated through my body today when I checked her temp at 6am and it was over 101 degrees. My first fear was that she had contracted RSV and we would have to head straight for the hospital. So, in hindsight a double ear infection isn’t that bad. What worries me is it spreading into her lungs…the unknown scares me to death. I drove straight from the doctor to our brand new Wal-Mart to pick up her antibiotic. It is the “yummy pink bubblegum medicine” that we all took when we were kids. I got a new dropper from the pharmacist, picked up some yummy treats for my little patient and headed for home. I immediately put her meds together and sat her on the counter thinking (like a fool) that she would take them like a champ…NOT IN MY WORLD!! Next thing you know there is “yummy pink bubblegum medicine” flying everywhere and the lyrics from Beverly Hillbillies ran through my head, “And up through the ground come a bubblin' crude. Meds that is, pink gold, Amoxicillin.”
On top of everything I have not felt good for days...not really hungry, no energy and congested. I explained it to Brandon like two metal plates being pressed together on my chest and my back. Basically, just YUCKY! So, my patience level is no where near what it needs to be to take care of a sick baby; especially, a baby who refuses to take her medicine.
I decided that I probably should do a little research about how to give a temperamental toddler medicine. I did…and we tried everything short of putting her in a straight jacket and we still had more of the medicine on us than she had in her. I am at a loss. I am so scared that she is going to get worse…my biggest fear in the world. I am asking for ANY advice on how to administer her meds successfully. I am thinking of calling the doctor tomorrow if she refuses the morning dose to see if they can just give her a shot of antibiotics because she sounds terrible tonight.
I guess the silver lining about being at the end of your rope, is that you really don’t have anywhere to go but up…let’s hope that happens sooner rather than later.
Monday, January 19, 2009
It is to be given to your new blog world friends, and they are to pass it along to their new blog world friends. It should go to those who step outside their comfort zone, and make new bloggy friends. I was so surprised by all of the support the preemie community showed after Bennett died and I moved from babysites.com to blogger. I met so many wonderful moms that had been in the same situation as me. It was so encouraging to feel like I wasn’t alone.
Once again, I was completely blown away by the support I received after I got the news about CF from my doctor. Moms with CF children and women that are living with CF that took time out of their busy lives to make me feel welcome and comforted. I have learned so much about this disease and about living with it from all of you! Words truly can’t express my thanks to all of you. So, I am going to pass this along to these four girls:
Christy from The Jobes:
Christy has two beautiful daughters and the oldest Mackenzie is living with CF. I have only had a chance to glance at her blog, but from that I can tell what an amazing mom she is and what incredible girls she has!
Alicia from Experiencing Each Moment:
Alicia is the first person to contact me after my diagnosis. She is mommy to two beautiful kiddos and her daughter is living with CF. Alicia is a wonderful Christian woman whose faith and compassion make her an inspiration to me! Thanks Alicia!
Cara from Cara Monster:
Cara is another blog friend that I connected with after my diagnosis. We are actually from the same area and share a love for Lupe Tortilla’s!!!
Jodi from Olivia and Logan:
Jodi is not a new blog friend, but she is a very dear friend to me and has been on my heart lately. Jodi gave birth prematurely to twins Logan and Olivia. We have so much in common and she always reminds me that I am not alone! Thank you, Bennett and Logan for bringing us together!
I would send this award to all of my new CF friends, but most of them already got one…so, I am going to say thanks to:
Jenn, Cindy, Christy, Somer, Angela and all of the others that have sent encouraging comments my way.
I realized something when Bennett and Ellie were in the hospital: Our nightmare is just that…OUR nightmare. It feels like the end of the world to us b/c it is the worst that is happening to us at that point. My CF story is not like any of the other people that have contacted me. I don’t live daily with their struggles, but I was never judged for my lack of knowledge about the disease or acting like a “baby” about the obvious very “mild” case of CF I have at this point. (yes…I used mild b/c it’s the easiest way for me to describe it and I felt bad for being so scared when in retrospect it's not as bad as it could be) So, thanks girls ~ you are all wonderful!
Okay, so our weekend was full of fun. Well, Saturday at least! I had a Girls Night at my house with 34 of my closest friends (and some friends of friends). I had Lupe Tortilla cater the food ~ which makes everything better! I realized on Sunday that I didn’t take one picture of the night…what was I thinking??? Brandon and Ellie had “Daddy night out” and went to dinner with Uncle Chris. After dinner they went to watch “Kung Fu Panda” in Sugarland town center and enjoyed Ben and Jerry’s ice cream. What more could a girl ask for?!?!
Sunday was spent relaxing. I think I am getting sick (coughing, drainage…yuck!) so I lied around most of the day. It worked out b/c we got a chance to relax and watch football.
My goal today is to get Ellie enrolled in gymnastics and download pictures from my camera and get some new ones up on the website…how long have I been meaning to do that?
So, 97 days left to meet our goal for team Chunky Monkey. We are so thankful for the donations we have received so far. I usually hate to ask for help b/c I try to think I can do anything on my own. However, I am asking for you to help us reach or goal. This is so dear to my heart b/c I am sure it was medical technology (with faith and God of course) that saved my baby girl and gave us the precious six months we had with our angel Bennett. I know we can do it! You can print out a sponsor form and raise money in your break room at work or recruit walkers and have them get sponsors. Remember, preemie babies are counting on US to help them. So, we are counting on you to help us…together we can make a difference!
Thursday, January 15, 2009
I was directed to the cysticfibrosis.com website by a new CF friend and WOW that was very informative. I actually emailed the director of Ambry Genetics and he answered some questions I have had about my two mutations. Rather than being classified as mild/moderate/severe CF the more appropriate terms to use are typical/atypical. Mutation R117-7T is a form that is typically associated with variable atypical CF and Delta F508 is associated with typical symptoms of CF. There is a huge range of symptoms that people with the same two mutations can express, so there is really no “simple” explanation. Almost all of my answers will come from meeting with the pulmonologist that we will see on February 11th. The remainder of the tests will be run at that time as well. Praying for patience to make it until then as I write this blog! So, after the twins and having Bennett suffer from some of the most rare complications of prematurity and then researching CF for myself I am thinking that maybe I could go back to school to be a nurse!!! Not really…but, it is interesting to research all of this stuff!
I haven’t mentioned this yet, but my little brother Dave is going in to have the DNA testing done. He actually presents more typical symptoms than I do (reoccurring sinusitis for one) and he has obviously never been tested. He is my baby brother (at age 28 I still call him my baby brother) and I am asking you to please keep him in your prayers as he goes through this scary testing/diagnosis process.
The awesome news of the day: Our blog was featured on marchforbabies.org blog webpage. Click here: http://blog.marchforbabies.org/ in order to read about us. How cool is it that out of thousands of families they chose our blog to feature!?!? I was totally shocked when I went to the march for babies site and saw Team Chunky Monkey out of the corner of my eye…I clicked on my name and it was a link directly to our blog bennettandellie.blogspot.com. . So, this is our 15 minutes of fame ~ isn’t that cool!!! Yeah, I know…it’s the little things in life that get us excited these days!!!
I am thinking I like the “awesome news of the day” and maybe I will try to incorporate it into my daily blogs…
**Remember that you have 102 days left to donate to Team Chunky Monkey for the March of Dimes… We are so thankful to our friends that have donated so far. We are starting early b/c we have doubled our goal from last year ~ every $1 helps! We are counting on you to help us and the future of premature babies is counting on us to help them…together we can make a difference.
Tuesday, January 13, 2009
The beginning of the conversation went something like this:
Doc: Okay, so you are here about these blood results for CF
Doc: Is there any family history of CF
Me: Well, Bennett tested positive in the hospital as a carrier, but no history on my mom or dads side.
Doc: And how is Bennett doing now?
Me: (with a horrified look on my face as I glance back and forth between Brandon and the doctor) ummm…well…Bennett died when he was six months old.
Doc: Oh, yeah (scratching his head) was that because of CF.
Me: Uhhh…no, he was just a carrier. Remember, I had premature twins.
And to be honest the conversation didn’t get any better from there. After looking at my blood results we talked back and forth and didn’t really get anything accomplished. He suggested I see a pulmonologist...no kidding! I shocked him when I told him I had already made an appointment with the director of the CF clinic here in Houston. His comment: Well you sure went straight to the top of the food chain. Yep, sure did buddy and thank goodness for her b/c today was a total waste of time (I didn’t actually say that, but I felt like saying it)
So we left with a copy of my blood results and I have been researching ever since we got home. I am going to post the two exact mutations they found b/c someone out there may know something about them or have those same two mutations (not that our symptoms would be similar). Two mutations found were : delta F508-9T and R117-7T.
From what I have read this is how I understand these two specific mutations:
Delta F508 is the most common and most severe CF mutation. If a person were to have a double mutation of delta F508 they would be considered to have a more severe form of CF. My other mutation is R117-7T which is considered a moderate mutation, however it is variable depending on the exact location of the mutation. For example, if the 7T from my test were a 5T I would have a more severe form of CF. So, from what I understand I have a mild-moderate case of CF.
This is a lot of info to digest and I am trying to do the best I can with what I have been given. Today reconfirmed the diagnosis of a mild-moderate case of CF and exposed the two mutations of the disease to me. The next step will be visiting the pulmonologist in February. She will administer a sweat test at that point. I am not sure what will happen beyond that. I am sure medicine and treatments will be discussed.
Our good news for the day: Brandon is not a carrier of the disease!!! Praise the Lord! I have spent most of my free time praying that Brandon would test negative for a few reasons. 1. It would mean that no matter how many CF symptoms Bennett displayed ~ there would be no way he died of CF if Brandon wasn’t a carrier. 2. Our remaining 5 embryos have a 50% chance of being carriers, but they can’t have the disease which means we can still use them for our next IVF transfer.
What a long week! I am sure the next few will be long too as we wait to learn more about how CF is affecting my life.
We finalized Bennett’s headstone today. I know it seems like it has taken forever…and it has! I couldn’t imagine choosing a scripture that would feel less than perfect at any point in our lives, so we had to pick the best the first time. It took a little longer than we expected, but it is just amazing. It is perfect for our little man and we can’t wait to have all of you out there to celebrate “Headstone Day” with us.
Hopefully we can get Ellie back to a normal life here soon. She has had a minor regression with the potty training and as I sit in bed and type this at 10:50 she is awake next to me. She is needy of attention and can’t seem to let me out of her site. I am sure she senses something going on, so I am going to work extra hard to make this house as normal possible for her in the next few days. It is amazing how one little bump in the road can throw them all off kilter.
Remember that you have 103 days left to donate to Team Chunky Monkey for the March of Dimes… We are so thankful to our friends that have donated so far. We are starting early b/c we have doubled our goal from last year. We are counting on you to help us and the future of premature babies is counting on us to help them…together we can make a difference.
I am sure there are a million other things to blog about, but to be honest I can barely keep my eyes open. I am so thankful for your continued prayers. It has not sunken in that I have CF yet…I truly went into the appointment today thinking that there was a way it was a misdiagnosis or maybe I was just a carrier of a more serious mutation. Well, that’s not the case. So, I will continue to research, learn, pray and wait until February 11th when we go to see the expert. Prayers for strength, patience and understanding are needed. We appreciate all of you!
Sunday, January 11, 2009
April 26th is the date and you can count on another awesome team shirt this year…I am thinking NEON colors! We would be honored to have you walk with us this year and donate to our team or raise money as an individual walker in your name for our team. To be clear these are your options:
1. Donate to Team Chunky Monkey (TCM) and help us reach our team goal. Simply click on the sidebar to donate today.
2. Donate to Team Chunky Monkey and pledge to walk with us on April 26th wearing your cool TCM shirt! Email your size to me.
3. Set an individual goal and have your friends and family sponsor you to walk with us on April 26th…still wearing the cool TCM shirt!
Whatever option you choose the money is donated to the March for Babies under Team Chunky Monkey and it all goes to the same wonderful cause.
We will be reserving Saturday, April 11th as our annual fundraising crawfish boil. This is open to all of our friends and family that raise money or dedicate themselves as walkers for our team. This will be the official pick up place for your TCM shirt, so plan on attending!
We are counting on you and the future of preemie babies are counting on us…let’s make a difference together!
Brandon, Angie, Ellie Grace and ~Bennett~
Thursday, January 8, 2009
This scripture was perfect Jenn! I have spent the last 48 hours researching, absorbing new info, crying a little and feeling grateful for all of the support I have received .
I am a little less panicked 2 days after receiving my CF diagnosis. Not in a “not worried” kind of way, but in a less neurotic kind of way. I am learning more every day and to be honest I have a lot left to learn about how this disease has actually affected me. I have yet to hear back from the fertility doctor that delivered my diagnosis and he seems to be the only one that has any info about my case so far. I need to know exactly what two mutations of the disease I have. I know he rattled them off to me on Tuesday, but to be honest I was totally unprepared to hear that kind of news and that left me unprepared. I have spent years researching infertility, premature labor, and preemie babies, so I feel completely ignorant at this point…
I vented my fears on Tuesday night and in return I have met some wonderful new friends that have been uplifting and informative. The CF blog world is as supportive as the preemie blog world which is such a blessing. Where would we be without technology???
Since Tuesday evening I have managed to piece my life together like a puzzle. All of the times my doctor chalked a symptom up to my Thyroid disease or a side effect of a fertility drug finally makes sense. The serious vitamin deficiencies that come up blood test after blood test finally have a reason. My case of CF is obviously mild because I have not been chronically ill my entire life which is a total blessing, but even more important to me is that I have answers to so many of my current symptoms. I have ALWAYS had vitamin deficiencies and GI issues. I have suffered from the occasional upper respiratory infection and one case of double pneumonia, but nothing serious which, again gives me hope. I just have so much more to learn. If you know me well, you know I hate being in this state of limbo. I am ready to get my life and my body on the right track so that I can fight this disease with intelligence and the right medicine. I am SO READY!!!
A good friend of ours commented that we have Bennett to thank for the doctors finally testing me for CF and she is one hundred percent correct. I can’t remember if it was Tuesday night or Wednesday, but all of a sudden I thought of Bennett. Not in a remembrance kind of way, but in a way of giving thanks. It is because of him that I was even tested and it is because of his enormous strength that I know this is just a small mountain for me to climb. My precious angel was way too perfect for this physical world and he continues his blessings from his eternal home. It was by coincidence that Brandon came home hours before my diagnosis with the final proof of Bennett’s headstone and for the first time it didn’t stab me in the heart to think about finalizing this decision. We settled on scripture from Ephesians 1:16, “I do not cease to give thanks for you, remembering you in my prayers.” It’s perfect…he is perfect…they are both perfect…we are so blessed.
Brandon has been wonderful. He has put up with a messy house and no dinner for days, so I decided to come through for him today! I actually felt a sense of normalcy doing my morning routine of cleaning up and having coffee. I am just beyond exhausted emotionally and physically and that makes for a boring (and a little crabby) wife. There is no doubt that God chose Brandon for me to spend the rest of my life with. When the going gets tough…and let’s face it, it’s been tough in the past, we seem to balance each other out. Ellie on the other hand has been unbalanced for the last two days!!! She no doubt can tell that something is going on and WOW she is acting out! The last two nights have been like “Ellie Grace Hour” in bed with her showing off and vying for attention ~ like she doesn’t get enough. I have made it a point to do some extra fun things with her like the Museum of Natural Science yesterday and “Bennett’s Park” today. I can’t wait to post our new pics b/c she has really grown in the last few weeks.
Thank you so much for all of your continued prayers and uplifting comments. I know we have only just begun, but I feel so much peace and comfort knowing that I have resources and friends out there waiting to help us and teach us.
“Be on your guard; stand firm in the faith; be men of courage; be strong.”
1 Corinthians 16:13
Tuesday, January 6, 2009
I was in Sam’s buying Ellie’s favorite snacks when a “blocked” call came through on my cell phone. I answered it and it just happened to be our fertility doctor. “Angie I have some bad news,” were the next words out of his mouth. I got that feeling in my stomach like it had just fallen to my feet when he said, “your test came back positive for CF.” WHAT…WHAT…WHAT…Did I just hear what he said correctly? Me?
When Bennett was tested in the hospital we were given the impression that males were more likely to be affected by this inherited disease. When he came back as a carrier we knew either Brandon or myself would have to be carriers. I was shocked to hear those words come out of his mouth that it was me… This meant that Brandon would have to get in to see the doctor immediately and have his blood work done in order for us to get some answers as soon as possible.
I was sad and I cried in the middle of Sam’s. I cried the whole way home as a matter of fact, but I knew at least there would be a way to harvest more eggs and have them genetically tested before it was too late in order to determine which ones would be affected. The other cup half full attitude I had was that Brandon would have to test positive too in order for us to be in big trouble.
I finally got home and got out the trusty laptop. I sat and watched Ellie play and I researched cystic fibrosis. The more and more I read about it the more and more it sounded like symptoms in my life. At 7:30 pm I got that sick feeling in my stomach…like maybe I had misunderstood the doctor and what he was saying to me earlier. I got out his home number and gave him a call.
That single moment…that single call changed my entire life forever…
No, I didn’t completely understand him earlier in the day. My tests revealed that I do indeed have the progressive, inherited, rare genetic disorder known as Cystic Fibrosis.
I have to pause for a second because it still hasn’t settled in and the tears are burning my eyes as they come pouring out…Yes, I have CF not as a carrier but as a disease.
I fell on the floor in our living room shaking uncontrollably. I was scared to death, Brandon was scared to death and Ellie was screaming because I was scaring her. That moment will always be with me as the scariest time in my life. All I know about CF is that it is a progressive inherited disease that severely affects lung function as well as gastrointestinal function. Because it is a progressive disease it affects life span. According to cff.org the average life span is almost 38 years old. However, there are different types of the disease ranging from mild, moderate to severe. I have a mild case, but I do display characteristics of the disease daily. All I have to say is I don’t plan on going anywhere for a while! SO THERE, CF!
Obviously, my thoughts seem a little scrambled up and are not as well worded as they are other times. I am still in shock to be honest. There are so many fears I have.
1. I don’t want to die young…I want to be here for my husband and daughter to watch us grow like I have always envisioned.
2. What can I do to help myself now…what can I take…where can I go to get help.
3. I do not want my precious Ellie to grow up being scared of losing me…the way I always worried about my mom dying from cancer at a young age.
4. I don’t want to leave Brandon here alone with Ellie…There would never be anyone else on this earth that can take care of them like I can.
5. I don’t want to burden Brandon…I know it sounds crazy, but that is how I feel.
6. What about my baby girl…what about all of the things I need to be here to teach her? School, boys (stay away!), girls and how they always talk about each other, college, weddings, babies…LIFE in general.
7. Do I start writing personal journals to Ellie now, so that when the time comes and I am too sick to parent her she will have little pieces of me from now?
I am just scared. Scared, but I refuse to sit back and miss one single day of my life or my baby girls life from here on out. I am going to call the doctor first thing in the morning and go in and pick his brain about this disease and what I need to do to live as normal as possible.
Please, please, please pass this prayer request on to all of our fellow bloggers that we keep up with. We are in desperate need of prayer and guidance while we gather all information we can about this disease.
I’ll leave you with one of the only laughs we had tonight. While Brandon and I were frantically researching around on different sites we came across a list of suggested ways to eat in order to decrease the GI discomfort that is associated with CF and it said to have a high fat, high carb diet. Brandon’s response: “Awesome! Looks like you can eat as many whoppers as you would like!” Except of course I HATE Whoppers! Anyway, prayers and any advice you have about CF are greatly appreciated during this time. I will keep all of you updated daily on my status.
Obviously, we are having to put our IVF on hold for now. We will have to see a genetic counselor before we can proceed with any other fertility treatments...we have to figure one life out at a time...
Monday, January 5, 2009
I started to relax when they put me in pre-op. I was thanking my absent husband for pushing me to buy i-phones for Christmas as I sat waiting and surfing the web. For about 2 hours I surfed and listened to music…until they finally took me back. I didn’t get nervous until the doctor came in and I saw all of the needles and other instruments he was planning to use. WOW…I was totally unprepared for the pain and discomfort that would accompany this. You would think after being on bed rest in the hospital for three weeks and giving birth by c-section to twins that this little test wouldn’t be so traumatic…wrong! Four shots and one dilated cervix later I was staring at my uterus on a television screen. It was fascinating! Watching the doctor gently guide the telescope through the cervix and into the uterus was like something off of discovery health channel. There was some minor scar tissue at the base of the uterus ~ it looked like very fine spider webs. Dr. Mangal used the telescope to break it up and continued to guide the scope up even further. I silently prayed after we saw that scar tissue that the uterus would be clear of any scar tissue, polyps or adhesions. If there is scar tissue in the uterus it will effect implantation and would probably require further surgery. I was so relieved when he reached the uterus and it was clear! I mean it was a beautiful uterus if I do say so myself!!! A “womb with a view” as my sister-in-law called it!!! It is amazing to think that there was ever a twin pregnancy in there b/c it looked so clear. Both openings to the fallopian tubes were wide open as well…not that they do me any good month after month!
At any rate the news was good and I was still alive! I was sent right to the recovery area where I waited for the doctor. It was the news that came next that would shake me.
If you remember back to when Bennett was in the hospital we had to have him tested for Cystic Fibrosis. In Bennett’s short six months he did display some symptoms consistent with those suffering from the rare genetic disease. We waited for about a week to find out that he tested negative for CF, but that he was positive as a carrier. In order to test positive for CF both mother and father must be positive as carriers. When someone tests positive as a carrier it means that either one OR the other parent is a carrier. We were relieved and moved on after that. When we decided to try and become pregnant again we had to consider CF testing on ourselves to rule out the possibility that we are both carriers. I was tested more than 8 weeks ago and I am still waiting to hear the results. Yes, I did ask about those results AGAIN today and even though the doc was carting around my 4 inch thick medical chart he said he hadn’t gone over the blood tests from two months ago yet. Irritating? YES! Especially, since he said he would suggest that we visit a genetic counselor before our next IVF cycle. WHAT??? We already have 5 embryos that are at or beyond day 5 and from all the research I have done it is supposed to be too late to test them for genetic disorders now. I was irritated with him for a number of reasons at this point:
1. I had already pitched a pretty big fit in order to get this appt today. I threatened to find a new doctor and mysteriously on New Year’s Eve he called me from out of town (on his personal cell phone) and scheduled our procedure for today.
2. I have been waiting for over 2 months to hear the results from the blood work I had done and he still hadn’t looked over it.
3. I have 5 embryos left and now he is talking about testing them with a risky procedure that could kill all of them w/o even knowing if Brandon and I are both carriers of CF…
4. I was in excruciating pain and I didn’t bring any Advil with me b/c I thought it was “a pretty minor procedure.”
5. I was starving to death!
I know that Dr. Mangal is a good fertility doctor, but I have super high expectations after our experience with Bennett. I felt like he was jumping to serious conclusions before he did a simple thing like READ MY CHART FOR BLOOD RESULTS. I hate feeling like I have to Monday morning quarterback a doctor’s decisions. I want to feel confident that they know what they are doing and that I am a priority to them…I want a designated driver!
In the meantime we will wait. We will be doing our embryo transfer in February…not a moment too soon. If you do the math we should be due sometime near December…why not add another miraculous event to the already crowded month!!!
Please keep us in your prayers as we await the results from the CF test. It is only through prayer and our spiritual designated driver that we are able to travel this road safely!
Sunday, January 4, 2009
The most frustrating part of having the flu for the SECOND YEAR in a row is that both years I have gone to the doctor for a flu shot. Actually, this year I tried the nasal mist because I had an allergic reaction to the shot last year. Some immune system I have! The good news is that neither Brandon nor Ellie seem to have come down with this nasty bug which is a huge relief to me!
After being sick on my couch for the last three days I will head to the hospital first thing in the morning to have a surgical procedure called an h-scope. Hysteroscopy uses a hysteroscope, which is a thin telescope that is inserted through the cervix into the uterus. Sounds fun doesn’t it? This will give our fertility doctor a better idea of the condition of my uterus and let him know if it will be suitable for another pregnancy. The last time we had this done we got good results, but that was 3 years and one tainted pregnancy ago. Never a dull moment!!!
After this procedure our next step is to begin the shots (with the horse needle) and prepare my uterus and hormone levels for another pregnancy. I think what I am most nervous about is the unfreezing process our embryos will undergo. We have five blastocysts (multi-cell embryos) left and experts say that approximately 70% will survive the thawing process. Our doctor has decided to implant two embryos provided we have two to implant, but that is another post all by itself.
The next few weeks will be exciting, exhausting and probably a little painful, but in the long run they will be worth it. One weekend morning three years ago right before we underwent our IVF egg transfer I was making breakfast. I cracked an egg open to make an omelet and out of one egg came two yolks. I was so excited that I called Brandon in to see it and I recall thinking that it could be some sort of sign of great things to come. This past week I was washing cherries off for Ellie to snack on and I had a similar incident. So many times the cherries are on their own stems and I just wash and go not thinking of anything. On this particular day I can’t tell you how many of our cherries were double and triple stems with cherries attached. Coincidence? I’m sure it was…but what timing! PLEASE keep us in your prayers for the next few weeks and I promise I will keep you all updated!