Bennett David Kahl

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

Wednesday, September 30, 2009

The news

I have been waiting and watching the clock all day for the news on our little follies! My nurse usually calls mid day to give me a report and to tell me what to do about my meds…increase, decrease or stay the same. The sweet nurse at the satellite office offered to take my blood again today and I politely declined and offered to drive out of my way to the very germ infested lab down the street…where they know what they are doing.

So, finally at about 4:45 my nurse called and asked if I did indeed go to the lab and have blood drawn. Ummm, YES! (and, I have another blown vein and needle mark to prove it!) She called the lab and they didn’t have any lab results for me…WHAT? How do you lose a person’s blood results. If you will recall ~ the same lab lost B’s blood more than once during the whole CF screen fiasco. It infuriates me b/c the doctor uses my estradiol levels to determine if I am on the correct dosage of meds. Not to mention, I have done loads of research on Estradiol levels/stimulation day and I was waiting to see what mine would be today. UGH! Stupid lab! (relax…breath…and picture yourself holding a sweet little baby…ahhhh…)

So, onto the other news. It’s getting crowded in those little ovaries; well maybe I should say those big ovaries. We have 10 measurable follies on the right ranging from 12mm-15mm (which doesn’t make sense b/c we had a 15 on Monday…I am assuming a little human error in calculation) and we have 6 measurable on the left ranging from 12mm-15mm. In addition, we have 3 smalls that were able to be seen on ultrasound. So, right now we have 16 measurables and we still have 5 nights of shots left, basically we are half way through. Typically, a follicle will grow 1-2mm/day, so we should have some very good sized follies. I asked today what the percentage of was of follicles that actually contain eggs. I have read that most follies that are at least 18mm probably contain a mature egg, but the nurse said 70-80% will have an egg. She also said that my Dr. is very aggressive about getting the egg out of the follicle. There is an embryologist waiting on the day of retrieval to look at the fluid from every follicle and make sure the dr. does actually get the egg out. So, if were to go in for retrieval tomorrow with the 16 follies we have now we should get 12.8 eggs…I am feeling positive so let’s say 13! Not bad for a 31 year old “advanced maternal age” mom with CF! I am feeling good about having at least 15 eggs…remember their target number is 20. With 5 days left anything is possible! Also, because I am so terribly anal I am going to ask to see my chart from my last IVF cycle so I can see exactly how many follies I had right before retrieval.

So, on Friday I have decided to skip the satellite office and go straight to the “real” office. The down side is that my doctor will actually be at the satellite office on Friday…dang! It doesn’t really matter though b/c I will still be on meds through the weekend and I have to go back in on Monday, so I can just see him then. My nurse is AWESOME and she can answer any question I would ask him anyway. I am just a little disappointed though b/c I was looking forward to getting his opinion about how this stimulation cycle was going…

I still feel great. Bloated and very tired, but I feel positive and happy. Tomorrow means only 7 days until retrieval, 13 days until transplant and 23 days until pregnancy test. YEA!!!

Thank you to all of you that have our family in your prayers. Your support and encouraging words are such an inspiration to us and a reminder to keep our hearts focused.

Romans 12:12
Be joyful in hope, patient in affliction, faithful in prayer.


Monday, September 28, 2009

What faith can do

It’s amazing what faith can do…almost as amazing as what we can do with faith.

I love the song “What Faith Can Do” by Kutless and it is the inspiration behind my post today. It is uplifting and it reminds me that it is ALL possible just as long as we keep believing.

Silent prayers get answered with faith. Like the ones I prayed about my FEV1 numbers. Last Wednesday at my CF clinic I shocked myself and my doctor and nurse with my FEV1. It is up 8 points…above where it was when I started my CF clinic visits! I was scared to death after my last visit (and the significant drop). I was even more determined to live healthy and set an example for Ellie after we got her diagnosis. So, the silent prayers that I said for weeks were answered last Wednesday.

You can overcome the odds with faith. Yes, we started our IVF process a few weeks ago. First, with pills, then we added Lupron to suppress my reproductive system, but it wasn’t until the results came in from my first ultrasound and blood work last Thursday that we actually got clearance to start the “real” IVF meds. We overcame a preterm multiple pregnancy, the death of our precious little boy and a CF diagnosis for both Ellie and me all within the last three years. We overcame the odds and survived all of it…with faith. (and some AMAZING doctors!)

With faith, impossible is not a word. I can’t tell you how IMPOSSIBLE I thought it would be to bring Ellie in for her first haircut…unfathomable! Well, we did it! Last Saturday we brought Ellie into Sweet and Sassy to have her first princess spa day. She got a princess lollipop, watched a movie and without any tears Brandon and I watched as a very talented stylist made our baby look like a big girl. Oh, what a moment…and she looks beautiful!

With faith, you have hope that never ends. All weekend as I could feel my ovaries getting larger, I had hope that the Follistim and Menopur were doing their job. That this time I would have a ton of follicles that would contain good quality eggs and that we will have options to choose the best embryos in the end. Well, today was the first step in that direction. I had my first ultrasound today (day 4 of stimulation meds) and I have 17 follicles so far. I have 7 measurable (ranging from 10mm-15mm) and 10 small (<10mm). I still have 7 days of stim meds left. They anticipate several more small follicles to pop up and we expect for the smalls to grow and mature. A follicle should be about 18mm to be considered mature and NOT all follicles contain an egg. So, the point is to get the most mature follicles by next Monday that we can and to HOPE AND PRAY that most of them contain eggs. I asked the nurse what her opinion was of the results today and she said, “they are better than we expected for day 4.” Good news!!! I’ll take it!

We have had a great week. I feel great despite the bruises in my tummy and the knots in my leg from the shots. I have tried to overcome my fear of the blood draws, but my uncooperative veins make it very hard! (Yes, I even picture myself holding a sweet little baby to help relax!) After the u/s today they needed to draw blood. So, like a good little patient I sat in the blood draw chair and put on my brave face. Then she stuck me…and dug…and dug…and dug until I thought I was going to be sick! Then she thought she could get it in the other arm. So, she stuck me and dug…and dug…and dug. By that time I am sure my face was pale and I was clammy. She thought about taking it from the top of my hand (I wasn’t going to let her) and then decided to just send me to the lab…what a novel idea!!! As I was checking out I noticed a book titled “Phlebotomy” I am TOTALLY CONVINCED it belongs to the sweet little nurse that made me her practice pin cushion! Only me!!! After three needles, the actual phlebotomist found my vein and drew blood all within 20 seconds!

My next visit is on Wednesday. I am hopeful that my body will continue to cooperate and I am excited about the results. Next Thursday is our retrieval day!!! Your continued prayers for our physical and emotional strength are much appreciated!


Tuesday, September 22, 2009

Take two!

Today was our second trip to TCH for Ellie’s CF clinic and it was as fun filled as the first!

The weather was terrible today, so I decided to leave a little early just to make sure we were there on time despite the pouring rain…ummm…that didn’t really work out.

I took a new route to the hospital thinking it would be faster and that didn’t work out either.

I decided to valet park because…well, I’m lazy and I hate walking through parking garages…and they were full, so that didn’t work out!

I got in the hospital put both of our masks on and headed to the eighth floor (after I asked the information desk if that was the correct floor)…wrong floor.

I waited 10 minutes for the elevator to go back down to the forth floor…wrong floor.

I finally found someone to help and after waiting another 10 minutes for the elevator I finally headed up to the ninth floor…eureka!

Thirty minutes late and a “little” frazzled we were finally where we needed to be and the day sailed by flawlessly from there.

I have to admit the sight of several children in masks made me a little nervous. Our first trip wasn’t on a typical clinic day, so there were really no kids with CF there. Today was a totally different story. It is hard to explain to people that don’t have CF or children with CF why it is so important not to cross germ paths with other CF’ers. I am still in the learning process myself which makes me a little more paranoid and seeing all of the kids running around in masks in the waiting area raised my anxiety level a little. There was an adorable little girl there that was super friendly and I am sure Ellie was dying to get down and play, but I kept her locked in my lap like a prisoner with her coloring book! Poor baby!!

To say I was relieved to be called back to our room would be a serious understatement. We got Ellie weighed in and she gained 2 pounds and grew 1 inch! She is between the 50 and 75% for both height and weight. They want Ellie to stay above the 50th % in weight, so we are on the right track.

We met with the nurse and then our friend the dietician came in. If you recall our last visit and conversation with the dietician…you will understand why I was a little anxious about what line of questioning she would be engaging my toddler in. Upon her entrance to the room Ellie announced she had to “go poopy on the potty!” So, I left the room with the sample cup for Ellie’s number two and did my best to catch her in action…fun times! I made sure that Ellie had a bag of freshly cut nectarines and apples for snack today, both of which she ate in front of our friend the dietician. Score 1 point for Team Mommy!!! Today’s conversation was about vitamins and Halloween costumes neither of which came with the answer “macaroni and cheese” ~ thankfully!

Our visit with the doctor was good. I asked about getting Ellie started on Pulmozyme and I am thinking after her next clinic visit in November she will be starting nebs. The doctor did order Ellie’s flu shot and annual labs today which I dreaded. Thankfully, she watches B give me shots every night, so she took it like a champ. Then, we were off to the lab.

Oh, the lab…a breeding ground for germs! There were kids EVERYWHERE…coughing, running, jumping on the chairs, screaming…a total nightmare. I had “paranoid germ freak” written all over my face and I am sure all of the other parents could tell. I stood up for our whole 30 minute wait and watched a dying fish gasp for air in the fish tank that was in the waiting room…so sad. I was so freaked out about the germs that I didn’t even have time to worry about Ellie’s impending blood draw.

Finally, our name was called and we were on our way. As the nurse prepared the vials and needle I pulled out my backup “happy plan.” It was one of Ellie’s favorite ring pops and it was broken into a MILLION LITTLE PIECES!!! Ugh! What was I going to do? Then I remembered Ellie grabbing the “lick-a-stick” out of our candy bag and me shoving it into my purse to hide it from her. SCORE! I pulled it out and held Ellie in my lap as they gingerly searched for a vein and began drawing her blood. Six vials of blood from my precious little princess and not ONE tear was shed! She was a super trooper just like her Bubba always was.

Finally, four hours after we arrived we were leaving. We met Daddy for dinner and now we are all home and cuddled in bed as the rain still comes down outside.

Tomorrow is my CF clinic (not planned to follow Ellie’s ~ just my luck!) and then Thursday is our blood work and first ultrasound preparing for the egg retrieval. I am excited and nervous (more about the IV I will have than anything else), but I am anxious to see how my body is going to respond this time around (how many eggs, etc.). I have actually lost a few pounds which is awesome, but I know the real fun is about to begin with the FSH/LH drugs as they take advantage of my body. Eleven days from Friday is the big retrieval day, so we are getting close!

Thank you so much for all of your continued prayers and support. It is hard to be super positive 100% of the day and your comments, calls and cards have all been so unbelievable.

Rather than an uplifting scripture I’ll leave you with words from my baby girl:
“Dear God, thank you for my blessings!” Amen!!

Tuesday, September 15, 2009

Healing Rain

I love music. I am not, however, musically inclined. I don’t play an instrument and I can’t carry a tune…unless, of course I am in my car with the radio turned up way too loud.

I love how music is poetic.

I love how music is relatable.

I love how music is expressive.

I love how music is open to interpretation.

I love to infer the meaning of a song based on its words and to imagine what provoked the author to write such words.

Today, THAT song was one by Michael W. Smith: Healing Rain

I was driving down the freeway, humming a song that I have heard a dozen times probably. It wasn’t until I started to sing the actual words that the enormity of the meaning hit me.

“Healing rain, it comes with fire
So, let it fall and take us higher
Healing rain, I'm not afraid
To be washed in Heaven's rain
To be washed in Heaven's rain...
Healing rain is falling down
Healing rain is falling down
I'm not afraid
I'm not afraid...!”

Healing rain…I can’t explain what that is for me. I know that the last three years have been filled with floods. I have grown closer to my faith and to our Lord with every storm we have encountered on this journey. As strange as it sounds, what followed our nightmare has been healing rain.

Bennett and Ellie were healing rain.

Bennett’s CF carrier diagnosis was healing rain.

Diagnosis of my CF was healing rain.

PGD was healing rain.

IVF is healing rain.

Healing rain…I’m not afraid…I’m not afraid!

I wish these black words on this white screen could explain the peace I feel when I sing the words of that song. I can’t even begin to get the right words written to explain it. All of the “struggles” we have been through in the last three years haven’t been a burden; they are all part of the healing our faith brings to us. Today…with that song…I had a moment. One of the best “ta-da” moments to date. To realize that I am not afraid of what is happening is such a relief to me. It makes my heart feel light. To realize that all of our burdens and struggles are all part of the healing rain…is huge.

I have tried to understand the peace I feel about our IVF this time. I have tried to explain it to friends as they looked at me with twisted looks on their faces. Three words: I’m not afraid.
I feel free by this realization. I feel renewed by the words of that song because they put all of my jumbled thoughts into a simple phrase…I’m not afraid.
Am I bold enough to say that I’m not afraid of everything/anything that will ever happen to us in the future…NO WAY! Am I grateful that I felt God’s word from the lyrics of that song and that I could relate it to our IVF process and the grief I still feel…YES!

Today was a big day.

Today is Bennett Day. Today was the 27th “death-aversary” of our precious little boy. Today meant white balloons and white flowers. Today meant it was time to put out a tiny pumpkin on our little boy’s headstone to make him a part of our Fall preparations…healing rain.

It was beautiful outside at about 80 degrees, low humidity and overcast. It was like a real Fall day…which we don’t get often in Houston.

There are pumpkins and fall flowers everywhere and the change of seasons often brings very surreal thoughts and very emotional feelings for me. I was pregnant with Bennett and Ellie in the Fall three years ago…the best 7 months of my entire life! So, it was an emotional day. The change of the weather and the day itself brought so many feelings to a head…healing rain.

We are chugging right along with the IVF process. I have another week of Lupron before we add Follistim and Menopur to the menu followed by various antibiotics, steroids and progesterone. I was very relieved when the last batch of meds was ordered and shipped. We are really doing this! HEALING RAIN!

My tummy has taken a beating and it looks like a tie-die shirt gone wrong! Various shades of red, purple, brown and yellow from the bruising of the injection sites…what a site! I keep asking Brandon what we are going to do when we are up to 5 shots per night…I am pretty sure my stomach won’t hold up and we are going to have to start using a thigh at that point. YIKES! Nonetheless, I am excited to see what the Lord has in store for us at the end of this journey. All a part of this storm that is bringing with it… healing rain.

I lost a lot of sleep a few nights in a row about the meds and what they are doing to my body. I have a terrible metabolism and I have always struggled with my weight…which is a very sensitive subject for me. I knew that the minute I started the meds my body would start storing fat like I was preparing for hibernation. To combat the anxiety…and the extra pounds that were just dying to take refuge in my thighs, we started biking. We got a bike trailer (a.k.a The Chariot) for Ellie and B and I are using the bikes we bought 6 years ago…that STILL have tread on the tires!!! We have gone 10 miles a day for the last three days and it is awesome! We took a break today to visit the cemetery, but we will be back on track tomorrow.

Today needed to be written about and sometimes it is tough to write about things that are so personal to me. I teeter back and forth about whether or not it would be better to just keep a personal written journal, but this is what it is and if nothing else, Ellie will have a great story to read when she is old enough! I continue to thank all of you…I know that our faith and prayers are only a small reason we feel so comforted during this journey. Your continuing thoughts and prayers are an amazing display of God’s grace.

I came across this scripture while I was reading a blog today and it touched me…
"Give thanks to the LORD, for He is Him who alone does great wonders, His love endures forever."
Psalm 136:1, 4


Wednesday, September 9, 2009


Oh, the fun has begun! I am a week into our IVF process and tomorrow the shots begin. The last few days have included night sweats and a few nightmares. Yesterday, I woke up absolutely burning up. I came into the office to get started on some work and enjoy my morning cup of coffee and as I worked it seemed to get warmer and warmer. I remember our first round of IVF when I would just break into a full hot flash and it wasn’t fun! I got up to take a shower and it seemed that our whole house was hot to me. We are warm natured to begin with and our AC is usually set in the very low 70’s. I went to check the thermostat and it was 77 in our house! Something was terribly wrong…and it wasn’t my hormone levels! It turns out that we had a little AC issue, but no worries we had a man come out and fix it! Phew!!!

I visited my doctor yesterday for the consult about my IVF calendar. I had totally forgotten about ALL OF THE MEDS that accompany the harvesting process. Antibiotics, steroids, shots (up to 4/day for about a week), pills…YUCK! Our insurance doesn’t pay for any of our medication, which can cost upwards of $4000 for one IVF cycle. That is a little overwhelming, so we are taking it one medication at a time and doing a ton of research to find the most affordable options. For our last IVF cycle I was only on one FSH medication (Gonal-F) this time I am taking Follistim and Menopur in combination. These meds are FSH/LH that help stimulate ovarian production and we are praying that they help create a lot of follicles that are filled with healthy eggs. Tomorrow I start Lupron…the worst medication in my book! It basically puts your body into a temporary state of menopause! So, today B asked me if I wanted to go out to dinner with friends this weekend and this was my response:
No, thank you! I will be going into menopause and you won’t want to hang out with me…let alone any of our friends!

Really, it’s not that bad. I do feel very hot and bloated on the medication which is more uncomfortable than it is painful. All of which are a VERY SMALL price to pay in the end. Our goal is 20 eggs this time. I did check and last IVF round we had 13 eggs and all 13 fertilized. I know with relaxation and faith we can do it!

I decided to check out what my good friend The Internet said about caffeine consumption and IVF…not good results! I heart my morning cup of coffee and it seems as if we are going to have to take a break from each other! I found this article and it was all I needed to read to make my decision. So, no fantastic glass of red wine with dinner and no pick me up cup of coffee in the morning. Cold turkey detox in our house! B is in for a fun few weeks!

Don't worry about anything, but pray about everything. With thankful hearts offer up your prayers and requests to God. Philippians 4:6


Thursday, September 3, 2009

The time has finally come

The time has finally come! I have repeated this scripture a million times in my head the last few weeks and it was the first thought in my mind when I got the call on Monday:

I waited patiently for the LORD;
he turned to me and heard my cry.
—Psalm 40:1

We started our IVF journey on Monday! I’m excited and I’m glad that it is finally here, but I am surprisingly calm about the whole process this time around. I talked to my nurse yesterday and I actually have a protocol for dates. I will start my first injections on September 10th and continue for about 12 days until we start the FSH which will be follistim this time. We are slated for an egg retrieval date of October 8th and a transfer date of October 13th. These dates can change +/- a few days depending on how well I respond to the Follistim.

We also had the pleasure of talking to the doctor (MD/PhD) that created PGD 19 years ago. PGD stands for Pre-implantation Genetic Diagnosis. This procedure is the reason B and I are even able to try for a third biological child. PGD is a very complex process that I won’t even try to explain and to us it is a second chance at fulfilling our dreams. Our conference call was on Tuesday with Dr. H and it was an amazing conversation. I expected this genius mind to be all science and not much personality/compassion…I was TOTALLY wrong! He was uplifting, informative and most of all he was hopeful. He reminded me that this process has many tiny details…and fortunately, we have had the pleasure of going through them once already. He reminded me to just relax. I would have cursed the person that told me to “just relax” during our first IVF round. This time I just know that I have to do that. I have been pretty relaxed through the decision making process this time and I feel confident in our choices. I love that Dr. H told me to just close my eyes and picture me holding our baby next spring whenever I start to feel overwhelmed…what an amazing picture that is! We know we are fighting against the odds this time, but honestly when haven’t we in the last three years? We have faith and love and we have each other. This journey is a blessing to us no matter what the outcome may be. We will not be weakened in the end… and that is ultimately what keeps me going. We appreciate you lifting our family up in prayer as we begin this journey. It will not be smooth sailing I am sure, but knowing that we have our faithful friends and family praying for us renews our strength.

Rejoice in hope, be patient in tribulation, be constant in prayer.
—Romans 12:12

So, my friends…HERE WE GO!!!

Our lives have pretty much stayed on the “go, go, go” dial that they have been on for the last few weeks. We’re busy, but I am beginning to think we always will be! B’s sister Aunt Courtney is coming in from Arizona today ~ YAY!!! We are so excited to spend the weekend with her and have some fun times together. B is also having his Man Fest…I mean fantasy football draft at our house Saturday. UGH! I am sure it will be a great time for them. B looks forward to this day all year and a lot of planning has gone into making this “one for the books!”

Ellie is doing great…minus the whining that she does for about 6 hours every day. I have truly loved every single milestone and age until this one the last few weeks! She gets so frustrated and just whines about every little thing that doesn’t go her way. We have seen a lot of the timeout carpet lately! She is still my most precious little gift and at the end of the day she still wraps her arms around me and says, “You’re my best friend, Mommy!” Who can be mad at her after that??? We are about 2 ½ weeks away from her second CF clinic, so I am looking forward to seeing what news that will bring.

Last week brought a scare for us regarding our crazy dog, Bo. Bo is our boxer and he is a constant source for entertainment in our house. Last week, B brought him in to have a spot on his little nose checked out. A few hours later they called to say they had Bo in surgery to remove the spot and they were sending it for a biopsy. I was heartbroken. Bo is B’s dog, but he has become Ellie’s true love and I just couldn’t imagine him not growing up with her. We were overjoyed to get the call this week that Boskers (as we call him) spot was benign! Hallelujah!