A new day ~ A new diagnosis

Well, I’ve been trying to decide what to say about yesterday’s visit with the new RE. He was knowledgeable, patient, kind, and informative. I felt as if I had been his patient for years. He knew my medical history and had actually READ MY CHART before I got into his office…what a concept! However, the day came with a diagnosis of another genetic disease…

We talked about the twins’ pregnancy and my complications. We talked about my CF and where I am at with that. And then he brought out another diagnosis. One that I had no idea about. One that I got results about a few months ago and the nurse said that everything looked good.

Rewind: Remember that nightmare blood draw that required 21 vials of blood and they had to stick me multiple times just to get the blood? The purpose of having that particular test done was to determine if I had any blood clotting issues. The results I received over the phone were great…according to the nurse, no clotting issues.
Fast forward: When the RE said okay, let’s talk about your Factor V Thrombophilia I looked at him with a twisted look on my face.
Me: What?
RE: I am assuming you have never heard this term before.
Me: (with concern in my voice) No…
RE: Well, your blood work came back identifying a Factor V Leiden mutation. This is a serious blood clotting condition that can lead to risks in pregnancy and can cause strokes. Basically, when you hear of that person on a long airplane flight that has a clot that caused a stroke, that is you.
Me: (dumfounded) What?
RE: You will be given Lovenox for the duration of any pregnancies and you should begin taking aspirin daily.
Me: Could this be the reason for my subchoreonic hemorrhage with Bennett?
RE: (nodding his head with a smile) It is very likely.

Holy cow! So, he talked for a while and seemed to think even with the risks and complications that Factor V causes during pregnancy that we could do our FET anyway. (more on this in a minute)

Then we discussed the quality of the embryos. Our last RE seemed confident that with the remaining 5 embryos we had because they were good quality and we got pregnant with twins the first time around. Our new RE described our situation like this: imagine your embryos are M&M’s. There is an outer shell and an inner cell mass. The outer shell is what will become the placenta and the inner cell mass will become your fetus. The quality of your outer “shell” determines the chance for implantation and the quality of the inner cell mass determines viability. So, our outer shells are just okay, but the insides are good quality. So, if we could get an embryo to defrost and re-expand then implant we have a good chance of becoming pregnant with a viable pregnancy. Seems simple…not really!

We were in his office for an hour. It was great to learn all of this info and I am very grateful that he was so patient with me and all of my questions. However, after my hours of research today about Factor V I have a million more questions.

It is very risky to get pregnant with Factor V. It can cause some VERY serious complications and it requires daily injections of a form of heparin (blood thinner). Basically, after all of my reading I am convinced that my hemorrhage (which is considered an early pregnancy placental abruption) was caused b/c of my Factor V mutation. If we had only known then what we know now… Basically, because I had such a terrible pregnancy the first time I am scared to death of a repeat. If my Factor V caused so many problems the first time around why couldn’t the same happen again…or worse? I am hoping to run into a few stories or blogs that document women with Factor V thrombophilia and their pregnancies. Just more food for thought.

So, what do we do now? We are at a crossroads. It struck me last night that with our 5 remaining embryos we could look into surrogacy. My prayer has always been for us to be parents…not necessarily to carry all of my children. I have always been open to any and all avenues that would end in us being parents. So, logically surrogacy is a very real option and it would be a huge blessing if it were that easy. Unfortunately, none of our options are simple or easy. We have time to talk about this b/c we are still waiting on B’s test results and I have a few more questions for the doctor, but I am ready to make a decision as soon as we hear back from Ambry.

This diagnosis really took the wind out of my sails. I literally got in my car yesterday and just cried. I am tired. I am overwhelmed. I just don’t even feel like myself anymore. Mentally, physically, and emotionally I am just exhausted. However, I know there is a blessing in the works for us. I know in my heart of hearts that we are in the middle of working toward our prayers being answered. So, for now I will just pray. Pray for great results from Brandon’s CF screen and pray that God will bring us peace in making a decision about how to proceed with our embryos. We would be so grateful if you would keep us in your prayers during this difficult time.

TGTIF (thank goodness tomorrow is Friday) I can’t wait to play with Ellie and hang out with our friends Ms. Candy and Rhys! It will be a much needed mental vacation. Happy Friday to everyone!

Blessings,
Angie

Long overdue update!

NICU CREW

NICU CREW plus parents

"Come on Baba"

We made it!

Happy family :)

Railroad museum visit (it was only 107 degrees that day!)

Daddy and Ellie having fun together

Ellie stalking the ducks...

up to no good!

Ready for a day out on the town

Picking flowers

Our beautiful view!

Ready to swim...and playing with the baby pacifier (no...she doesn't suck on one! I brought it for her ears on the airplane)

Cheeseball!!!

Cheeseball: take 2!!!

Visiting Bubba on Memorial Day weekend

Watermelon face Ellie Grace!

YUMMY!!!

Finally...


So, we made it back from vacation…and it was fantastic!

The trip there was so easy! I was dreading the travel time with a toddler, but the combination of a great little girl, mommy’s type A personality and having Daddy and Biddie with us made traveling a delight! Upon arriving at our resort we were told the property had 10 pools and a beach…WHAT…I knew right then I was in Heaven!

Brandon’s older sister, Courtney, lives in Surprise which is not far from Scottsdale. We had such a blast hanging out with her, visiting the Railroad Park and museum, shopping in Old Town Scottsdale, and eating at VERY, VERY YUMMY restaurants! Seriously, the best Italian food I have ever had! In Arizona…??? However, I realized that NO ONE has better mexican (alright...TexMex) food than Houston!

I tried to balance visiting and running around with hanging out by the beach and having some down time for Ellie. We wogged every morning up to Paradise Cafe to eat breakfast which ended up being about a 2 mile round trip. It was fantastic to have the quiet time to take in the mountains and the beautiful horticulture in Scottsdale. It was so cool to walk under key lime trees and beside the giant Saguaro Cacti. Things seemed to be going well until about the 3rd day there. Ellie was growing tired of the heat (it wasn’t below 102 any of the days we were there!) and it was hard to keep her occupied with not a whole lot of fun “kiddie” things to do. I think she was just missing her own bed and toys not to mention she cut another 2 year molar! We had a minor issue on Tuesday while Brandon was at his training. Let me just say that an entire pack of sanitizer wipes, two soiled pool chairs and hand washing a bathing suit later we were back up in the room with a super dose of Motrin so Ellie could sleep off her little tummy bug she seemed to have. Although, as time progressed Ellie continued to eat and I am pretty sure her little episode was a result of heat and teething…ugh…it was totally disgusting whatever it was!

The trip home was just as easy and it really makes wanting to travel in the future very appealing! We even took BOB and gate checked him…he was so wonderful throughout the trip! He even fit in the trunk of Auntie C’s brand new car! What a man!

The trip seemed to fly by and I would give my left arm to be laying out on the beach drinking another frosty tropical beverage…oh, those were the days! However, life goes on and we came back and had to get right back on track! Friday was our standing date with Rhys and Ms. Candy! We decided to change it up a little and head to Sugarland Memorial Park aka Bennett’s park! After walking the path two times (b/c we had two sleeping babies!) we were off to the mall for some lunch. After our fun day mommy came home to a sparkling clean house (thanks to our Heaven sent housekeeper!!!). Saturday B and I went furniture shopping. We desperately need new couches as our have become nothing short of dog beds for Gabbie and Bo…boy are they in for a rude awakening! Thanks to Ms. Candy, Brandon and I headed to Chic Warehouse. Holy cow! It was so much fun and I am pretty sure we found what we were looking for. I was in Heaven in that store! You can pick any style combination and fabric and they custom make your furniture…WHAT…I love it! So, this analtype A mommy has a few very big decisions to make in the next few days…B gave the thumbs up for whatever! So, now the big decisions…fabric and style. I am stuck between a sectional or two separate couches that will sit across from each other…any suggestions?


I must say that it was nice to come back to a three day weekend for Daddy. We have had a fabulous family weekend of cooking, movies, furniture shopping, baking and wii playing! But that’s not all…

The Friday before we left for our trip was a crazy, crazy day! Of course, we had our weekly play date with Rhys and Ms. Candy (as Ellie calls her!). We ran last minute errands on the way home and then it was out to visit Bubba and see his new headstone. For almost 2 years I have been waiting for that moment. I thought I would be overcome with emotion…but, as I looked at it I didn’t really feel anything. Maybe it’s because there was another foul up and it isn’t completely installed…it’s just sitting above my son’s grave…but, his name is on it…surreal.

From the cemetery it was on to dinner at Lupe Tortilla’s with our NICU reunion group (minus one family). It was so much fun to see Adam, Andrew and Rees! Adam and Ellie were “next door” neighbors in their pod, so it was awesome to see them together. I can’t believe how much they have all grown and what true miracles we have. Our babies were all born three or more months early and there they all were eating chips and queso and running around the water fountain…amazing.

I also got the results from my CT scan on Friday. They weren’t much of a surprise to me and I am very grateful for that. It showed minimal Bronchiectasis and no mucus plugs. My sinus CT showed a deviated left septum. Overall, my chest CT looks good! What a huge blessing! I go in on June 17th to talk with my Pulmonologist and get my medication routine planned out…it will be a breeze! On the other hand dealing with Ambry and LabCorp has been a NIGHTMARE! Seriously, why does blood need to come from a certain lab in order for insurance to CONSIDER covering it and how does a lab lose a person’s blood??? We found out late Friday that Brandon was going to have to have his blood drawn for a 3rd time in order to start the processing for the extended CF screen. Ridiculous! So, I will be counting down until results day. This Thursday will mark one week down…at least one more to go. Prayers for God’s patience to shine through me are being said as I type this (yes, I can do two things at once!). Also, we are meeting a new RE on Wednesday morning. Yes, I love our old RE (infertility specialist), but let’s recall the issue with the CF diagnosis (5 months b/w blood draw and results…beyond ridiculous) and all of the problems with his subpar nurse. I wasn’t going to visit a new RE unless we had to reharvest new embryos, simply b/c I thought we would have already done our FET (frozen embryo transfer). When I got the reminder call last week about visiting the new doctor I figured it was meant to be. This doctor comes very highly recommended from the genetic counselor and he has been ranked among the top RE’s in the nation. Oh, how I pray that next month we will be planning on our frozen embryo transfer…praying, praying, praying for an answered prayer!

Blessings,
Angie

Wordless Wednesday

The baby was starving for Chickfila!

Date at the zoo...Ellie had to stay home b/c of the swine flu.

Say...CHEESE!

Ellie and her new friend BOB

Playing in BOB

In trouble for playing in BOB

She got over it fast!

Such a big girl...

It's bright out here Mommy!

Just in case...

Ellie was asleep during her date with Rhys Man.

Visiting Bubba

Can't forget to bring Baba!

He loves me...

Mommy's blessings on Mother's Day

Daddy and his girl

"Come on Baba...wet's go!"

My beauty...

The girls!

Be Still...

Be still before the LORD and wait patiently for him;
Psalm 37:7

Being faithful has never been a downfall of mine. I have held onto my faith through my mom’s battle with cancer, through college and the decisions I made for my future, through my relationship with Brandon, through our battle with infertility, through my hospitalization and bed rest, and through the loss of our precious baby boy.

Being still…being patient, during those times was and continues to be my mountain to climb.

(Im)Patiently waiting to get Brandon’s blood results even though Labcorp lost his blood

(Im)Patiently waiting to go through our next round of IVF

(Im)Patiently waiting for the results of my CT scan

(Im)Patiently waiting to get my daughter potty trained

(Im)Patiently waiting to get Bennett’s headstone

(Im)Patiently waiting to decide whether or not to sell our house

The thing is, I realized that even though I am steadfast in my faith, I am constantly “going” and “working” to have an end result for each of these challenges as quickly as possible. I am reminded of one of my favorite songs by StorySide:B

When I feel like caving in
My heart my soul is wearing thin
I just want to give up
Nothing seems at all to add up
Can you hear me Lord?
My face is down upon the floor
It’s then you whisper in my ear
“Be still and know I'm here”


Be still…God is weaving together all of the “tiny” miracles that will create that perfect moment we have been praying for. It’s not a surprise and it’s not sudden; it is through prayer, patience and faith.

Such great advice…right? I am working on it. I know Brandon will be given the “all clear” from his CF screen, I know we will do IVF again and I am hopeful (only b/c I don’t want to jinx myself) that we will have more babies. I have worked on the prayer part of my journey and I can feel my faith growing stronger every day, now I need to work on my patience.

So, a week off from blogging and that is what I have come up with. I need to be more patient! (Among other things!)

Onto the weeks highlights!

It was another week that just flew by. Ellie and I have a new man in our lives that has kept us busy all week. His name is BOB and we have spent every day with him for the last week! BOB is our new jogging stroller. Mommy decided that she was going to start working out (after the 5 mile MOD walk inspired me), so the Chico travel system wasn’t going to cut the cheese anymore! I spent HOURS (literally) researching jogging strollers and I even consulted my very detail oriented friend C that has an awesome stroller. I am in love with BOB!! I haven’t missed one single day of wogging (½ walking ½ jogging) in two weeks…even when I felt under the weather. We wog 2-3 miles every day and I love it! In my two and a half years of mommyhood I would only strongly suggest a few baby items. The BOB is right on top of my list! I will not be getting a travel system for our next baby; I will simply get another jogger with the infant attachment. Ellie has enough room to stretch out and relax in the BOB and it holds up to 70 pounds!!!

Weekends are always a slight nightmare for us. We usually have a party or an event and to be honest by the time Saturday comes Brandon is totally exhausted from his busy week. This weekend was no different. We woke up and went out to breakfast for the first time as a family! Usually B will do breakfast in bed on the weekends for his ladies, but we went to Denny’s instead…yummy!!! I was also surprised with a spa day! So, after we came home and Ellie and I wogged while B did some work. We got ready, dropped a gift off at a birthday party for our friend Kylie and we were off. It was a great day! B waited for me and then we had a family dinner in Town Center and then walked around to the candy store and Dessert Gallery. I was totally exhausted from our day ~ and so was Ellie! We were back home and in bed by 9:30!!!

I had a fantastic Mother’s Day ~ although as I have said before, I really feel like every day is Mother’s Day. I am blessed to be able to stay at home with Ellie and that is the best gift I could ever have been given. However, B still went out of his way to make sure we had a fabulous day. Church, visiting our little guy, lunch, wogging (yes, even after mimosas at brunch) and a relaxing evening watching tv.

This was one of the best weekends we have had in such a long time! Time spent together as a family; out on the town doing things together…you can’t beat that!

All good things must come to an end…and they did this morning with a trip to the hospital. I was dreading my IV, but you will be so impressed to know that I was such a big girl! No screaming, crying, or holding this 31 year old down! Nope…I didn’t even flinch! Actually, I thought the nurse was just going to draw blood (which is still hellpainful for me), however she was really inserting my IV. You should have seen my face when I figured out she had done the IV. There was an older woman sitting in the same area and she was just giggling at me b/c I was so shocked. Brandon looked at me and said, “Wow, you did such a great job!” I told him, “I know, and this means I get to pick where we get food when I am done!” FYI: I decided on Ruggles b/c I wanted tomato basil soup and a yummy salad…it didn’t work out for me.

I did a great job with the CT…it was a breeze. However, I got an F in the following directions portion b/c I neglected to take my bra off. Minor issue! We were in and out in ONE HOUR!!! Nothing yummy was open at 9:00am, so I had to settle for McDonald’s. I am still crossing my fingers that B will bring Ruggles home for dinner…we’ll see!

So, now we wait PATIENTLY for the results. I am praying that we get some news by the end of the week. Now I’m off to finish laundry and start packing for our trip to Scottsdale, Arizona. We are leaving on Saturday and I can’t wait!

Blessings,
Angie

A small prayer request

The day slipped away, so I am hoping to post about our fantastic weekend tomorrow.

I neglected to mention last week that I am going in tomorrow morning for my long awaited CT scan for my chest and sinus. This might not be a huge deal for all of my other cystas (that have lived with CF), but I am scared to death!!! I HATE, HATE, HATE needles and I have to have CT with contrast...drat the cat!

I am nervous about the procedure because I have never had a CT, but I am more nervous about what they are going to find. I'm not just nervous...I'm scared to death.

The results from this combined with the results from my PFT's will decide what type of treatment I will do daily for the rest of my life. This is just the first of many CT's and PFT's I will have...but, the good news is this is what is going to keep me alive to see my babies have babies!

So, I know it's not THAT big of a deal, but a prayer for my peace of mind and ease of this procedure would be greatly appreciated! Also, pray that they can find a good vein on one stick because if they can't they won't be doing a CT with contrast!!!

I'll update tomorrow.
Blessings,
Angie

Not inspired…

So, I realized today that it has been an entire week without a post. I’d say, “I can’t believe how fast time flies by,” but I’ve said that a time or two in the past few weeks!

Really, honestly, truthfully, I just haven’t felt inspired to write. If I dig deep down and just come out and say it…I think it’s because Mother’s Day is right around the corner. I love Mother’s Day and I am so very grateful to be able to celebrate this day (although I truly feel like every day is Mother’s Day…b/c I am blessed enough to be a mommy). It’s just so hard to celebrate Mother’s Day without one of your babies. It’s hard to do anything without one of your babies…but, really I don’t even feel inspired to write about that right now.

I have to figure a way out of my funk before Sunday. We were supposed to have a big “headstone” unveiling, but Burleson Monuments fouled up the delivery of Bennett’s headstone, so that won’t be happening this weekend. I am sort of relieved that we don’t have to do a big “unveiling” though…I am just feeling like I want to mourn and “celebrate” that moment with Brandon and Ellie.

Today was a nice mental break. We spent the day with Rhys and his mommy again. Friday has turned into our play day and we count the days down until our next meeting. Next on our agenda…we are going to take the kids swimming…Lord help us!

I am hoping I will feel like digging into my heart soon because getting my feelings out on my blog has really proven itself to be the best form of therapy for me. Maybe tomorrow…

Flashback Friday

Today is going to be Flashback Friday...I am posting some of our favorite pics from the month of April.
Happy Friday!
Angie

Beautiful Smile!

Go Team Chunky Monkey!!!

My best friend ~ Auntie Lizard!

Laid back in the park.

Seriously, no one should leave the house looking like this!

The Easter Bunny is coming!

NO MORE PICTURES, MOMMY!